Love Rules!

Here we are.  It’s the third day of our new year.  The third day of new beginnings, so I’m told, and new attitudes…..new challenges and new goals……new everything.  But I have our washing machine running this morning and it’s reminding me that the sameness of life also continues despite my desire to work up some enthusiasm for newness.  Aaron had a seizure last night and so once again I am washing his bedding from the mattress pad up to the top layer…..his favorite cheetah blanket, or whatever animal it represents.  I’m not complaining at all.  It’s our life and I’m thankful that I’m here to be a part of it, and to care for Aaron.  It’s certainly not new.

Aaron doesn’t care for new, unless it’s a new video or a new bag of candy.  He doesn’t like new routines or new schedules, and he doesn’t like the people or the holidays that cause a disruption to his sameness.  On Thanksgiving Day, Aaron came into the kitchen while I was preparing our meal.  He asked when we would be eating.  I told him it would probably be around 2:00.  He stared at me for a few seconds and then said, “That’s why I was thinking if I could eat lunch.”  I didn’t have to look at the clock to know that it was nearly 12:00 and to Aaron, 12:00 means lunch……Thanksgiving Day or not.  He did agree to wait for his meal, but he did give remaining in his routine his best effort as well.

We try not to give in to Aaron’s routine oriented way of viewing the world when there are special days or events to consider.  We give it our best effort in order to include Aaron in our family traditions and our special times together.  Yet we know that at times it’s not only difficult but nearly impossible for Aaron to comfortably enter into our celebrations together as a family.  The complexities of his autistic world, at times, will simply not allow him to move beyond a certain point.  There are several reasons for this dilemma that he…..and we……face during the holidays.

One reason revolves around conversation.  Aaron doesn’t understand and is rarely able to enter into the normal ebb and flow of family conversation.  Andrea and Andrew both came home for Christmas on Christmas Eve.  We sat around the table and talked that evening, and all of us noticed Aaron.  He had moved to one end of the table.  His eyes darted back and forth between us as we talked.  We were catching up with Andrea and Andrew……their lives…….their jobs……their friends.   Soon Aaron would loudly interject with his “Hey!!”  And we would all look to him as we gave him an opening to talk, but he often didn’t quite know what to do with this opportunity to enter into our flow of talk.  So he would pause and then he would continue.  “Uh…..well…..did you know that my favorite character on Phantom of the Opera is the Phantom?!” 

His comment didn’t fit at all into what the rest of us were discussing, but we’re used to this with Aaron, so we all commented in some way.  We really tried to act as interested in what he was saying as we did with the rest of our conversation, but sometimes it’s hard.  And if you give Aaron an inch, he’ll take a few dozen miles and he’ll talk until the rest of us are…….honestly……..bored beyond words.  So after we all responded to Aaron, we would pick up our conversation where we had left off and once again Aaron would sit there with darting eyes and bated breath, waiting for his next opportunity.  “Hey!!”  And we waited.  “Uh…..well……did you know that there’s a Queen alien?  Is she bigger than the other aliens?  Why do you think there’s a Queen alien?”  So then it’s our turn to say, “Uh….well…..we didn’t know that, Aaron.”  Come on.  Show interest……show enthusiasm for Queen aliens and for Phantoms and for whatever else Aaron chooses to talk about, we’re all telling ourselves. 

Another reason that Aaron gets stuck during the holidays in his point of no return is the change in his routine.  Everything is messed up.  His meal times……watching Wheel of Fortune with Mom…..bedtime rituals, especially if Mom doesn’t come right away to say goodnight……playing SkipBo……..having his bathroom to himself……and so much more.  His brain is soon on overload, no matter how Gary and I try to maintain his sense of normalcy. 

The third reason for Aaron’s holiday struggles……and probably the straw that breaks the camel’s back……is having to share his time and space with others.  Aaron has gotten used to being the only “child” at home now.  He is doing better with having Andrea and Andrew come for visits…..probably because he knows he can talk and talk to someone other than Mom and Dad.  We weren’t sure how he would react to Megan, Andrew’s girlfriend, being here again this year.  Megan arrived the day after Christmas.  I was a little nervous, but I greatly relaxed as we all stood in the kitchen chatting and I noticed that Aaron was happily talking.  Soon I had him tell Megan about his movie of the moment…..Phantom of the Opera……which fortunately is one of Megan’s favorites.  Aaron loved feeling included as all eyes focused on him, and he really enjoyed our interest in hearing him sing his favorite Phantom of the Opera song.  He’s hilarious when he sings and we all laughed with him as he relished being the star.

 

And then I goofed.  Aaron had returned to his room, so I asked Andrew to go up and tell Aaron that it was time to eat.  There are reasons that this wasn’t a good idea, but suffice it to say that Aaron from that point forward began to do down the path of frustration and anger.  He wanted me to come get him for dinner, for one thing, and though we roll our eyes at that, it was this important to Aaron.  His nearly overloaded system was beginning to crack under the holiday strain.  He was rude to Andrew during lunch and we knew then that we were facing an uphill battle.  When we later opened presents from Megan, Aaron sat with his back to Megan and Andrew.  He was edgy still. 

Then off we went to walk through Botanica and see the Christmas lights.  It was cold and we all bundled up, and piled in the van……including Aaron.  I let him have his favorite, normal passenger seat, beside Gary.  And wonderful Gary walked beside Aaron and kept defusing him the whole way through Botanica.  You can see in the pictures that Aaron is NOT seen.  When he’s in this frame of mind, you can forget pictures.  They only make him angrier.  We were way down that frustration path at this point.

 

 

We got home and I was hurriedly taking off my coat, getting ready to set out all the snack foods to enjoy while we played our Christmas games.  Aaron knew he was welcome to stay downstairs and play the games with us, but Aaron detests this part of Christmas.  He doesn’t like the silliness and the loud laughter…..at all!  And in the mood he was already in, we knew he wouldn’t want to stay.  So as I removed my coat, Aaron turned to me and loudly said, “Mom, I wish Andrea and Andrew and Megan would just leave, and that I could have things normal again!”

Embarrassing, yes…….especially because Megan is still new to all this and we so wanted her to feel welcome.  Thankfully she’s kind and understanding.  You must be in these situations with Aaron.  But Aaron’s comment was also telling as he revealed, in his blunt way, that he wanted his normal life back.  The night went downhill from there, if that was possible.  The five of us totally enjoyed the games, but we were often interrupted by Aaron’s heavy footsteps on the stairs and the floor as he came down to check things out.  He really wanted to enter in, I believe, but he didn’t know how to comfortably do that.  At one point, he looked at the container full of wrapped Bingo gifts and he softly asked if he could have one.  That made us sad.  Of course, we let him unwrap one and he was happy to get a Wal-Mart gift card.  Then off he went to stew in his anger some more.

 

Aaron and I eventually ended up in my bedroom, where he talked angrily about how we only love Andrea and Andrew, and only want to talk to them….and to Megan.  He cried for a long time, a sure sign of deep frustration.  My heart hurt for him as I tried to comfort and assure him of our love.  I really believe that Aaron senses a difference in how we talk…..our inflections and our words……when we talk to him compared to the others.  Try as we might, we can’t manufacture the same interest in his comments compared to theirs.    Aaron is perceptive……so perceptive. 

I also know that he needs repercussions for poor behavior, so I took the movie away that Andrew got him for Christmas, as well as the lap desk from Megan.  Finally Aaron came downstairs, face and eyes red from crying, and he gave a semi-apology to them.  I helped him into bed, but it wasn’t long before we heard him coming back downstairs.  He walked into the room where we sat, tensely waiting for another outburst.  But in his hand he carried his Ghostbusters movie, which he thrust toward Andrew.  “Hey Andrew!” he enthusiastically said.  “Have you seen this movie?”  And Andrew, with equal enthusiasm, said that he had and then he said, “Who you gonna call?”  Aaron laughed and took the movie back upstairs…..and we knew that his crisis was over and all was well once again.

The next morning, Aaron wanted to give some of his crescent rolls to Megan and Andrew for breakfast.  And when they left for a couple days, and returned to see us again, Aaron was fine with that.  I wish this scenario wouldn’t be repeated next year, but I’m realistic enough……we all are…..to know that it very well might be.  I returned Aaron’s movie and lap desk from Andrew and Megan to him, hoping that he understood the consequences of poor behavior and the reward of good behavior.  We always hope that Aaron will understand and that things will click in his brain, but his brain isn’t like ours at all.

 

So we do our best to understand Aaron, and to love him in all his unique and often frustrating ways.  Like Andrea said to Megan on the night I was upstairs with Aaron, as they cleaned the kitchen…..”So now you see what it’s like to be a part of our family.”

Yes, it’s not easy to be a part of this family sometimes.  Sometimes I think…..AUTISM RULES.   But then I realize that only one thing really rules.  LOVE RULES!!  We don’t necessarily love autism, but we all love Aaron.  We seek to understand autism, and therefore better understand Aaron.  I see growth in all of us that has occurred over the years.  It’s the growth based on our experiences with Aaron, and growth based on knowing that Aaron may improve in some areas, but he will never be totally like the rest of us. 

We may feel beat up and tired and angry ourselves, but we must remember that love rules over all.  God’s love for all of us, and our love for each other and for Aaron, will remain firm during these rough spells.  There’s nothing new about that, even in this new year. 

What a long post!  I have laundry to put in the dryer, and much more to wash.

With love.